My name is Tanoa and I am NAF’s Social Media Coordinator. I am proud to announce that I will be climbing Mount Kilimanjaro alongside Mike De Rosa this October! I will be there to document the journey through pictures and video and support Mike’s efforts as a compatriot on his Read More…
Step into the world of Mary Hogan, where genealogy goes far beyond a mere hobby and leads to learning about a pervasive genetic disorder called SCA27B. A Family Affected – The “Darby Glide” Many of us have logged onto Ancestry.com and tinkered around for a few hours. We’ve seen the Read More…
Thank you for submitting your comments for the FDA! NAF gathered feedback from the Ataxia community to submit to the FDA. We’re concerned with the FDA’s decision to refuse to file Biohaven’s new drug application (NDA) for troriluzole without a full review of the clinical trial results. Read our full statement Read More…
Thank you for submitting your comments for the FDA! Troriluzole, an experimental drug being developed by Biohaven, completed Phase 3 clinical trials last year. While the primary endpoint assessing benefit across all Spinocerebellar Ataxia (SCA) types was not met, Biohaven believes the results show benefit among participants with SCA Type 3 Read More…
Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of Read More…
Family planning when faced with a hereditary disease can create difficult decisions. Read about one woman’s remarkable journey of courage, hope, and determination in the face of adversity. Jessica shares her experience utilizing in-vitro fertilization preimplantation genetic diagnosis (IVF PGD) to start a family free from the shadow of Ataxia. Discover how Read More…
Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully understand what Ataxia is and what legislative action is needed. 5th Annual United Against Ataxia Virtual Hill Day Was a Huge Success Virtual Event Read More…
NAF is hiring a full time Accountant. This person will be responsible for for all core accounting functions including: A/P and A/R, payroll, maintaining the general ledger, journal entries, reconciliations, and assisting with the month-end close. Our staff has the option of working remotely, with quarterly in-person collaboration days. This Read More…
Author: Sherry McLaughlin, NAF Support Group Leader What do you do when you or a loved one has been diagnosed with a Rare Disease? You search for a physician who is knowledgeable, and you seek out others with the same condition. This is exactly why the Pacific Northwest Rare Disease Read More…
This is a new periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Manager Welcome to NAF’s first issue of Ataxia Med News. Intended Read More…
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
